Learning to parent a healthy child

This summer, my husband and I were at a concert in the park, listening to my oh so talented brother-in-law perform on stage, and chatting with our friends - when a complete stranger-to-me walked up to my side. Making small talk while the rhythm echoed in the background, I soon learned that he's known my husband for a long time, and has hung out with him on a few occasions. His point for approaching, he made clear, was to let me know now much he loved this blog. How he couldn't wait to click the link when he saw another post, and how captured he had been with Toby's story.  I smile ear to ear because I love when this happens, when another person I don't know makes it a point to offer their support and love to my tiny boy; Toby who now has another fan rooting in his corner.  I couldn't have fathomed that after 7 months and almost 21,000 views later, this all worked.  This journey that I've struggled with documenting and living, it all had a point and a purpose.  And now I'm walking a tightrope - bridging the gap from living with a sick child to a healthy one.  I'm not sure how long it will take me to get to the other side, or worse, if I'll fall. 

When a year goes by in 5 months.....

You know the sayings - "Time Flys", "They just grow up too fast", "They won't be little for long"?  We'll the first few years of my son's life, I had no concept of what that meant. By the time his second birthday rolled around, I swear it felt like I should have an 8 year old.  I'm guessing the constant sickness, stress and worry, and plain confusion made those theories inapplicable to our lives.  We were weathered, to say the least.  Then the time came when we finally received a diagnosis, a correct one, that had proven treatment and a time-tested plan.  The cherry on top - new doctors and nurses, who continue to amaze us everyday with their knowledge and heartfelt worry and encouragement for my son. 

So we started this treatment, and it was rocky at first, but then slowly, we fell into a routine.  And my tiny son started growing.  For the first time in a year, we saw a change.  A change that is so powerfully overwhelming and beautiful.  The sense of relief you didn't know you needed.  The pounding of worry in your heart you had grown accustoming to feeling every minute, disippating enough to make you realize how harsh that pounding actually grew to. You weren't even aware how all consuming it was because it was a feeling that you had gotten so used to, you thought it was normal.  Even more than his height, his health.  The vomiting-every-day, sad, bloodshot, puppy dog blue eyes -  watering every night while he looks at me confused and scared.  Gone.  Pale, see-through skin - soft and cold, now colorful and vibrant. Lifeless, limp limbs trying to struggle through the day because they aren't being fueled with enough sugar - Now working, moving, pulling and pushing like a normal 2 year old.  It's like we've been huddled into Wonka's elevator, pushed the normal button, and shot right out through the sickness into the way real life is supposed to be.

What's not caught up though, is me.  Parents can't say enough how fast their children grow, and now I'm trying to understand that saying at WARP SPEED.  My baby has grown to a boy in 5 months.  Its a concept so foreign to me, my mind can't wrap itself around it.  It sounds funny, like I'm conveying this is bad, but I think things that are wonderfully amazing can still cause confusion.  It's this confusion I'm working through.

In addition to our nightly injections at home, we've been going monthly to our Endocrinologist at Children's for a hormone cocktail, injected via a huge needle in his tiny bottom, and its been doing amazing things for him.  During our last trip, we were in the elevator pushing buttons and being loud, when an employee there asked Toby how old he was.  We say 2, and as I'm getting ready to go through my standard speech about why he's so small, she just continues to gab with him, asking him about numbers and colors and shapes. 

Her unemotional response to his age, in that moment, was such a powerful thing. The first time I've said his age and haven't received a look of horror, or a laugh, or a sad pitiful frown.  Water stings my eyes. Relief. What a wonderful moment in time, a feeling I want to freeze and thaw out on bad days. 

 

April - The visit that lead to our diagnosis

 

May - Month 1

June - Month 2

July - Month 3

August - Month 4

 

September - Month 5

 



October - Month 6



 

 

And now clothes shopping.  From our 9 month wardrobe that's been in hanging in his closet since he was born, to brand new size 18 month clothes.  Slowly, stocking up on 24 month sizes, trying on those pants and seeing just a few more inches will bring him up to that size completely.  What once would have been six inches of extra fabric, now reduced to 2, and on a few pairs, 1 inch.

Toby with his friends Sophia (19 months, same size/weight) and Abel (2 yrs 10 months - 4 months older than Toby) 

Someone recently told me it looks like Toby has been stretched, that some magic miracle medicine has had him grow like the beanstalk.  I can't help but agree. 

April

October

So it can be said, Toby now looks the part, but it's my fault he's not acting it.  I don't think I did anything wrong, or abnormal.  I think it's a simple fact of life with a child who is ill - he's having a hard time accepting the change that comes with rules and regulations - something pretty much foreign to him his whole life. 

A model parent would watch what their children eats, monitor TV time, take away binkies, potty train, and be strict and firm when the time is needed.  I have not been any of those.  When my son wanted to eat, I would give him whatever he wanted, whenever he wanted it.  Cookies in bed - sure honey, how many?  Ice cream for breakfast - yes Toby, what flavor?  What show do you want to watch while you eat?  Let me hold you while your sick, Let me give you your binkie and blanky while were at the doctor, in the hospital, lifeless at home.  You've all had these normal moments with your children, and I'm sure you've let things slide a time or two as a reward, but for my son, his entire life has always been whatever he's wanted, whenever he's wanted it.  Because I couldn't bear to see him in anymore pain than what his body put him through, and because it stopped his soft, tiny eyes from stinging with tears when he didn't feel well. 

Now though, I'm transitioning my parenting to one of a healthy child.  And my poor sweet boy, well, he just doesn't understand.  How confusing it must be, in just 5 short months, to go from getting everything, to slowly being told no.  Time outs - yes, we have those now.  Blanky and binky time, thats just for bedtime.  And no, we can't eat ice cream everyday.  His fits of rage at this new dictator of a mother, I understand.  If I were him, I'm sure I'd be angry too.  So I'm trying my best to remain level headed, and go down this road with self assurance and fearlessness - because for so long, I couldn't imagine a life with him where my thoughts and actions could remain steadfast and strong. Wish me luck as I conquer this terrible two - I hope it will wrap up as quickly as it started.  He may not understand it now, but maybe one day he'll thank me for being such a monstrosity of a mother that I treated him like he was healthy.  And maybe on that same day, I'll finally be able to accept the saying, "Time Flys" with no confusion and fear.

Thank you for Listening,
Lindsey